What is your experience with people who h... - Cure Parkinson's

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What is your experience with people who have trouble understanding your speech

21 Replies

Recently, I am having enormous trouble with people who say quite rudely that they cannot understand me because I am speaking too fast or slurred. I face this problem more often on the phone as opposed to face to face.

I am more bothered by the way they rudely tell me in a tone of voice that is pretty condescending. Has anyone else encountered this problem? If so, how do you respond?

21 Replies
park_bear profile image
park_bear

Just at the other day someone reproached me for talking too fast on the phone. It seemed like they were frustrated rather than condescending.

in reply topark_bear

Maybe both.

laglag profile image
laglag

In the beginning, just tell them you have Parkinson's disease and you can't talk too well and most people will understand after you tell them.

Parkie- profile image
Parkie-

I get the same, and it's heartbreaking. It is starting to prevent me from going out... Just yesterday at my chair-yoga class, first class since spring session ended, my friends made me repeat and I felt they were closely watching my facial expressions which are becoming uncontrollable, emotion-wise. Felt so bad...

in reply toParkie-

I agree. You start to feel like an outsider and there are many ways to react. However, I quickly discovered that lashing out wasn’t an option. I angrily told off a pharmacist who told me that she couldn’t understand me and said that in a way that sounded very mean. ”I don’t speak Chinese,” I said, because I thought- how dare she insinuate that I could not speak English.

Needless to say I said that because she was oriental and looked Chinese. She immediately called me “racist” and told me that I was being mean!! Go figure. However, I regretted that because I never meant to be racist. I just reacted at the moment because of my perception that I was being insulted for no reason. I shudder to think how I would have even been able to navigate through life if I had always been this way. My professional life has depended upon my abilities to communicate with others, something that I took for granted and viewed it as a secondary skill, not worth cultivating. It came too easily to me.

Sherry1960 profile image
Sherry1960

Sorry you were hurt, Parkie. Please don't let it stop you from socializing. Im sure your friends didn't mean to be insensitive. :( Have you tried the Big and Loud program? It is specifically designed for PWP by Lee Silverman. I took the course and it helps. It is about a six week program.

MerckK profile image
MerckK

The more You are concious of your problems, the more you lose the confidence. I was hesitant to talk over phone because of this speech non clarity but I corrected it by reading newspaper loudly, singing loudly with the songs I love. Please be confident. 95% of people above 50 get caught by one or other disease. So don't be sad, be happy and enjoy life the way it comes to you

jeffmayer profile image
jeffmayer

Quite directly tell them to do one

in reply tojeffmayer

It backfires though !

felixned profile image
felixned

Talk to a speech therapist. They really help to understand and address the issues that are happening as the disease is progressing.

in reply tofelixned

I am. They have taught me to pace myself and use rhythmic techniques to help. It is hard to do at all times but I expect pharmacists of all people to understand!

felixned profile image
felixned

I feel your pain. Stay positive

GymBag profile image
GymBag

Come on toughen up a bit, guys.

Who cares what they think , you should never be embarrassed by having PD .

Tell them you have Parkinson's and your doing the best you can and then smile and walk away or hang up.

The big problem is that no one will wait for me to finish a sentence or a thought in a conversation. They do not do that very long before I fill them in.

Grumpy old man ? If that's what it takes , your damn right.

in reply toGymBag

Sometimes people don’t know what is Parkinson’s!

laglag profile image
laglag in reply to

That's very true. I got a pedicure last week & dyskensia was a little wild & I always explain about the PD & most of manicurists haven't heard of it. After about 10 minutes she was so angry/frustrated, she let her boss finish. 💅

Big & Loud & RSB can help you.

in reply tolaglag

I hope someone knows how to explain this condition to someone uneducated. I hope that there is a small write up somewhere.

jeffmayer profile image
jeffmayer

Unless we walk around with a banner saying I have Parkinson's what can we do most people are polite when you say I have Parkinson's if there not then say do one

boundless profile image
boundless

Sometimes it is hard to understand me on the phone.I start my conversation with" Please bear with me, I have Parkinsons and sometimes it is hard to understand me" I have had nothing but good results fom this. No one has been rude to me and seems like they completely understand.

Good technique. “Fall on the sword,” preemptively and figuratively, so to speak. I do get results as in “sympathy” when I go soft. Unfortunately, I am coming off an ego that used to be the size of Mount Everest and it’s hard, if not humiliating. I am learning to swallow my pride and apologize upfront, constantly and say “sorry” several times. I cry sometimes when I look at what I have become.

JohnPepper profile image
JohnPepper

Yes! But most people don't know anything about Pd. We have to explain to them why we speak as we do. Some will not listen and others do.

Try to speak slower! We tend to speak much too fast. Consciously talk SLOWLY, it takes a lot of effort.

Bruceyg65 profile image
Bruceyg65

I found LSVT Loud beneficial but I have 2 changes to the standard LSVT approach. First, I now forcefully spit out the primary sounds of each word - the initial sound regardless of whether it is a vowel or consonant, and any remaining consonants in the word. I exaggerate mouth movement for the sounds I spit out. Second, instead of reciting common phrases when practicing I have a word list I recite. The list has 4 words per letter and I try to get as much variety of sounds as possible.

When I practice I read the word list 5 times and then read out loud from a book or newspaper 10 or 15 minutes.

I’ve found 3 times a week retains status quo, daily practice brings about some improvement, and twice daily brings rapid improvement. I sometimes go weeks without practicing. When I start getting a lot of requests to repeat things I start practicing daily.

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